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Blessed with Cystic Fibrosis and a positive attitude, it is my duty and passion to show the cystic fibrosis community that anything is possible through this blog that discusses the daily trials and triumphs that accompany not only life, but a CF life. RSBR is a hub for comfort, information, advice, encouragement and understanding. It is a place where no question is ignored, no accomplishment is too small, no goal is too big, and every comment is cherished.

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Ronnie Sharpe

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Saturday, March 13, 2010

This is a blog by a fellow cyster, Lauren. It's actually in response to an amazing blog written by Piper just a few days ago. I highly encourage you guys to read through the start of this post and continue to read it by clicking over to Lauren's blog.

A CFer who I is listed for transplant and who I respect and admire so much, Piper, recently posted a blog which you can read HERE . She discusses positivity and questions how CFers, at different stages of the disease, can understand it. She got me thinking about how all CFers as well as non-cfers can universally understand each other's take on being positive. Before I begin my discussion I want to make a Disclaimer that this blog is in no way meant to offend anyone but rather to bring together the CF community in discussion.

First let me make a couple points:

1. CF is a confusing disease in the sense that it affects everyone differently. There are many factors contributing to this difference including environmental factors, upbringing, bacteria, access to healthcare and technology, age, biology, genetics (both with the CF gene and others), compliance, lifestyle, and just plain luck. Some people with CF may appear perfectly healthy, some run marathons, some have never been in the hospital, some have received transplants and are living healthy lifestyles, some live on oxygen every day, some spend half of their year or more in the hospital, some are preparing for transplants, and unfortunately still some don't make it past the age of 16, or 20, or 30 (and we pray for the families and lives of those people every day). The fact is, it affects everyone differently and although there are some people who are non-compliant, there are alsopeople who try their best to be healthy and still end up sick.

2. It has been my own personal experience that if I do everything I am supposed to as far as compliance and exercise, that I am one of the "lucky" ones. But this is taking into account that I go to clinic and have been admitted to a world renown hospital in Boston, I was diagnosed very young (although not at birth), I have been lucky enough to always have good insurance that enables me to have the best treatments possible, I live a lifestyle that is not detrimental to my health (i.e. I have not yet begun to work full time), and I am young. I have had medicines like pulmozyme and tobi for the majority of my life, I have had access to the vest since I was 7. Yet, before I started to be religious about doing my treatments and exercising, I was in the hospital two or more times a year for 2 or 3 weeks at a time (and not just for routine things, I've had severe hymoptisis, i've been on oxygen, been to the ICU, been so sick I could barely talk, etc.) I also had my fair share of skipping treatments (sometimes for a week at a time) of cheating (dumping out my nebs, shortening my vest, not taking my pills) of not exercising, of being lazy. And I saw, as a direct result of that, a lot more time spent feeling sick and being in the hospital.

3. Although it is difficult to compare someone with CF who is virtually symptomless and someone who is getting new lungs, there should still be respect for the lives that we all live. There is still a baseline of numerous amounts of treatments and therapies that all CFers must do to keep themselves healthy. The disease is still progressive and just because someone may be healthy now, it doesn't mean their disease might not take a turn for the worst at any moment. (And vice versa, it doesn't always mean that just because someone is unhealthy now they can't get better)

I think that as a CF community we all need to respect the fact that our disease affects each of us differently, sometimes we don't have control over it, but that doesn't mean that we should ever stop trying to make ourselves better, like Piper said "here's to trying." We can still be inspired by each other's fights even when one of us is sicker than the other if we respect and understand how differently CF can affect some people. I stress compliance and exercise a lot in my blog because ...

Friday, March 12, 2010

The following issue is a very common one amongst the CF community. I just wanted to post the question and my response to see what you guys think. What would you have said?Post:

Let me start by asking that no one give me the pat answer of "treat your CF kid the same as the non-CF kids" I know that in an ideal world we could pretend the CF doesn't exist and place the child rearing ahead of the CF, but the reality is that my first priority for my daughter is making sure she gets all of her CF treatments.

I'm really running into a problem with my three year old and discipline. Yeah, some of it is the age, but some of it is due to the fact that she is pretty spoiled in several areas. There are lots of things that I don't say "no" about for her. Its not about purposefully spoiling her -- but rather about fighting the important battles first. Alyssa HATES to do her vest and its a huge production every night. The only thing that works to keep her quiet and not ripping the tubes out or shutting off the machine is to let her pick the tv show we are watching. This means that at treatment time, whatever her brothers are watching turns off for the sake of keeping her treatment complete.

Another example is food. Alyssa has to eat like a CF kiddo, and that means that I allow her to have a wider choice of foods. If she doesn't like what I've made I try to accommodate her, if she doesn't eat dinner, she can still have ice cream afterwards. Different rules apply to her and the boys know it and deal with it.

But the problem is that she is beginning to see that different rules apply to her and they are spilling into all the other areas of life. She instigates issues with her brothers (they walk by, she pushes them or she purposefully pulls a toy out of their hand, or she throws a fit when the tv show is not "hers"). All of these not CF things get handled promptly by me. She gets a warning (unless she hits) and then a time out, but it doesn't change her behavior at all. Some days she'll get 10 different time outs (in her room). I talk to her all the time about good behavior and give lots of positive reinforcement for when she does share. But you can't exactly sing the praises of a kid who didn't hit their brother this time.

I'm going nuts here. And I know that a lot of this is because of the CF and how it changes the rules, but I just don't know what to do about it. I'd love some insight from those who have been there.

My response:I have no CF children. I however have CF and think that my mom did quite possibly the best job ever. So of course with my advice, you can take it or leave it...

I would never ever ever say "because of CF". If you think you have problems now, wait until she's interacting in the real world where nobody gives you special privileges "because of CF". My mom treated me no different than my brothers. CF wasn't a central focus in my house. Yeah, I was a sick kid at times and had to go in the hospital and do my treatments 3 times a day, ok, so what? I was still a kid. I still got disciplined the way my brothers got disciplined (except a lot more cause I was a brat).

She's not eating the ice cream "because she has CF". She's eating it because she's 3 and likes ice cream. Don't finish your plate, no ice cream. If you're concerned about your daughter getting enough calories, there are powders you can put in milk that will add nutrition and calories. High fat and high sugar foods aren't the only way to pack on the calories. You can do it many other ways without her even knowing.

How do you handle your other kids when they disobey? Do the same thing for her. We are who we are; CF doesn't make us who we are. If she's this way with CF, she'd be this way without.Schedule treatment time for the same time every night, that way, the boys can pick the show before it, and then when it's treatment time it's her turn. Simply allowing her more options and priority "because of CF" is going to create a monster.

I also agree that taking away something important to a child is usually the best option for discipline. At least, I know that's what worked for me, and I was a crazy kid.

Bottom line: I would treat a CFer no differently than his/her brothers or sisters. Life isn't going to be fair her whole life and that's not changing. Life isn't fair for all non-CFers as well. A lot of it is her age, but I really think you need to nip it in the bud before her whole mentality is shaped into "I have CF, therefore, my way or the highway".

With all of that said...I have no kids and I talk a big game now, but who knows how I'll respond until I'm in the situation. Just know that I get that and I'm just trying to help.

Thursday, March 11, 2010

I had something else planned for today, but I couldn't pass up posting another cyster's blog because it is just that good. I won't post the entire thing, but I HIGHLY encourage you to click here and visit Piper's blog. It's raw. It's real. It's thought provoking.

What does "positivity" mean to you in the context of CF, or life in general?

I feel like "positive attitude," "positivity," and other words get thrown around a lot by really amazing and well-meaning people, but I'm not sure everyone's version of what it means to be "be positive" is really the same. I mean, I highly doubt many people see themselves as having a "negative attitude" for example -- they may see themselves as being "realistic" or even "honest," and in turn they may think that others are unduly cheerful or even "in denial." And I guess this all got me thinking, because is one person's positive thinking another person's denial? Or is my realism your negativity?

And even more vexing, is our "hope" or "positivity" threatened by stories that don't fit into our paradigm? Or is our sense of self and worth degraded when others do better than we have with the same disease?

I plan to respond to this blog sooner rather than later, but I know that it's going to take me a while. I tend to either offend people or put my foot in my mouth when it comes to this topic. I will try to craft a well thought out and sincere response soon though as I feel that this is a very important topic.

Wednesday, March 10, 2010

This past week has been pretty terrible for weather here in "sunny" Arizona. It seems like every time I get ready for a run, the skies open up and it starts to pour. I have to admit, it's really throwing me off of my game. I still start each morning out with a walk however by bundling up, throwing my hoodie on and just "toughing" it out. It's actually pretty peaceful to walk in the rain. I can tell you that I enjoy it far more than Jezzabel does. She still acts like she's going to melt every time she even thinks about rain. Anyway, getting that morning walk in for me is crucial. If I don't get that walk in, the "ick" feeling in my lungs will usually stay with me throughout the day.

Although the afternoon runs haven't been going as planned, Mandi and I have discovered another way to exercise. The wash behind her parent's house. Now, for those of you not from the desert. A wash is basically a river bed that rarely sees a drop of water and most of the time is "over grown" with some vegetation and random cacti. Lucky for us, her parent's house backs directly up to one. This has proven to be a great way to get in a quick workout and something the JBell thoroughly enjoys. See, Jezzy isn't the most disciplined walkee in the world and often tugs on her leash. The beauty of the wash, we're the only ones down there and she is leash free. I can't begin to tell you how much she loves it. It's nice for Mandi and I also as we can focus more on each other than constantly yanking back J Beezy.

We started a new game with Jezzabel that has proven to be quite the workout. While Jezzy is busy sniffing around and not paying attention, Mandi and I sneak off. Then just as we're getting out of eye site from her, we call her name and sprint the other direction. We run until J catches us. I'm not sure how many wind sprints we did today, but I know it was a lot and I was FOR SURE winded! We also managed to play a game of hide and seek which Jezzabel proved to be way too good at.

Point is, something is better than nothing. The weather doesn't always cooperate with what we want to get done and 5 minutes of sprints are better than sitting on the couch watching Judge Judy (although I did that also). Hopefully the weather holds up tomorrow, I push through this head cold I'm experiencing and maybe, just maybe I'll actually be able to run after putting on my shoes!

Monday, March 8, 2010

Today at lunch Ronnie and I were just discussing the busy couple of months we have coming up in our lives. My brother, Josh, is getting married, Ronnie goes out of town to speak at an event in Albany, Ronnie needs to get in for a tune up, we have wedding prep, our wedding, and our honeymoon. We had tentatively thought through timing of it all, but we hadn't talked about it all since Ronnie's trip to Albany was scheduled. As we started chatting, we began to realize it was going to be a TIGHT squeeze to get Ronnie's tune up in. Josh's wedding is March 28th, and he is standing in it, so he can't go in until after their wedding. Then, Albany is April 16-17th, which means he can't go between Josh's wedding and Albany, because that's only 2 weeks. We get married May 22, which means if he goes in after he gets back from Albany, and stays 26 days (4 days under his typical stay). That would get Ronnie out 1 week before the wedding, just enough time to help with last minute plans and moving all of our stuff into his condo or into a new house (details on the house hunt possibly next week). Talk about a TIGHT squeeze. If anything goes slightly wrong while he's in, it could get interesting for the wedding day. But, we need to do it that way. The hospital stay needs to happen, so we're going to make it happen, and trust that everything will go smoothly.

All this to say, we truly believe that hospital stays are IMPORTANT. It is CRUCIAL to be proactive and not reactive when it comes to taking care of CF. Could we push off the stay? Yes. Could that result is him getting sick and causing irreversible damage? Yes. Is it worth that? NO. A little frustration and a little uneasiness about timing and scheduling is well worth preventing potential, long term damage. I would love Ronnie to be around the month before the wedding to help with last minute planning, errands, moving, etc. I will be forced to do a lot more work, and potentially all of the work, but one month of more work on my end and missing my fiance is well worth maintaining his good health and lung function. So I'll take it. Ronnie is being proactive and not waiting until he's really sick to go in, so it's likely that his stay will be nice and quick, and he'll be out and feeling awesome for the wedding and honeymoon. So we're going to work really hard this next month so he goes in as healthy as possible.